Over the past month, I have shared many updates via Facebook, I am also copying them here so I have them all in one place. In essence, this is the story of the beginning of our journey as told by Facebook:
June 21st, 2014
Just want to say that I really appreciate all the love and support. I haven't been able to respond to every message but it helps so much to know we aren't alone. They are still trying to find the root cause. We got some unsettling information last night and I'm trying not to completely fall apart. I need to trust that his body can reverse this without any drastic treatments. The good news is that we will likely come home tomorrow, maybe even today, but he has lots of tests and dr visits in his future while they attempt to make a concrete diagnose and determine how severe his case is. He is healthy in appearance and behavior and has no major outward signs of his internal distress. He is a strong little guy.
June 24th, 2014
Lots of people are asking for updates, please know that we are focusing on Nathan and camryn and doing our best to keep ourselves together. The seriousness of his symptoms is beginning to set in and overwhelm me. We are at Wisconsin Children's Hospital now, Nathan had his first ambulance ride as we got transferred here. This is where they have the top specialists on his issues with his bone marrow (not cancer but a failure of the marrow to adequately produce blood cells) and associated liver stress. Our doctor here is working hard to have a full diagnosis and plan by the end of the week. That may mean we go home with some treatment plan or it could mean we are here longer for treatments. I don't know. Just keep thinking of Nathan. He is amazing and being so strong and brave through everything, and he is still his happy energetic self despite his body struggling right now. And for all of you who stopped by or sent packages to us, from the bottom of my heart thank you. You have made a huge difference and lifted his spirits with your love, kindness and generosity. I know you are all here cheering us on.
June 26th, 2014
Nightly update. Doctors are feeling like it appears to be an autoimmune issue, his own body attacking and consuming his blood cells and attacking his liver. As for the aplastic anemia, after reviewing today's bone marrow biopsy, it appears as though the bone marrow is beginning to repair itself although we have to wait for the full biopsy to be certain. Liver is obviously still very very stressed. The good news is, if this is the issue, the treatment isn't terribly scary. He will be on immunosuppressive steroids on a trial basic for a few days to see if there is an effect. There is a chance we might be home in a few days to continue treatment at home if his numbers rebound as quickly as they hope. We will obviously reevaluate if his numbers continue to degrade or even do not begin to improve. Think some more happy thoughts for us, you are making such a huge difference in Nathan's spirits and our ability to manage all of this. I can feel the healing energy and positivity. I sure hope the doctors' hunch is right here as it's essentially the best case scenario for his situation with no long term changes in his quality of life other than obviously following up with a rheumatologist and figuring out what is going on with his immune system. He did have a horrible recovery from anesthesia though, scary stuff. Thankfully camryn was with a friend today so she didn't have be here for this. All in all a good day and I remain incredibly hopeful. I feel like his body is trying to heal but we need a little boost from modern medicine to stop this pattern of cell destruction.
June 27th, 2014
My heart is full... And so is Nathan's wall. From the bottom of our hearts, thank you for lifting us up with your kindness, love and generosity. Seriously I am overwhelmed going through all the packages and cards that we've gotten today.
June 27th, 2014
Still not sure if the steroids are working, tomorrow and sunday should give us more insight. Had lots of visitors and packages from friends today which was such a nice surprise. Doctors seem to be exploring other possible causes and seem less confident that it's auto immune but, no matter the cause, the immunosuppressive steroids would be the first treatment they would try anyway so we are hoping it will at least halt some of his liver stress and blood cell destruction and give his bone marrow a chance to heal a bit... And either be enough to fix his system or give us time to figure out the real cause and appropriate treatment. Despite testing for nearly everything under the sun, it's still unclear what is causing all of this and his blood counts, trends and symptoms don't fit any particular diagnosis closely enough. Apparently he hasn't "read the book". Nathan and camryn both got their spit swabbed for bone marrow typing in case it comes down to needing a transplant. I'm just trying to live in the moment and take each day as it is because there is truly no other choice unless I want to drive myself insane. Thank you to everyone who has stopped by, sent well wishes, cards and gifts today. Despite all the uncertainty, this was a very uplifting day. And apparently you all got the message that, even though I have almost no appetite, I can still eat chocolate. Now I'm sitting with mug of tulsi tea and mulling over the plethora of chocolate options that are before me. Decisions decisions...
June 28th, 2014
No major updates today. Waiting for his daily labs to hopefully show a positive change in his blood work overall. His liver seems to be improving which is awesome but the blood counts are kinda inconclusive thus far as to whether anything is changing. So now we wait, hoping that tomorrow shows a change in the right direction across all major numbers and we can start planning for home care and unpause our lives. I am not a patient person by nature but I guess that's one of the lessons in all this. Let go, trust, and wait. We did have a fun day though, a few more visits from family and friends plus some play time with a therapy dog who was the sweetest fluffiness thing ever, and a visit from the build a bear workshop too. And a few brief bouts of happy roid rage (is that a thing?) as Nathan laughed and goofed off like a crazy squirrel then dropped for a long nap afterwards. I guess I'll take the happy rage over the angry one though so I'm counting my blessings where I can get them. And he's sleeping now. Tired tired little guy.
June 28th, 2014
Highlights of the day
June 28th, 2014
Jay just sent this picture to me. I don't think signs of hope and healing get any clearer than this.
June 29th, 2014
Happy thoughts for more good news tomorrow and a discharge within the next few days. Little man is sleepy today with lots of mood swings due to the steroids, but still generally in good spirits and looking less "yellow". I almost can't believe that something as simple as steroids may be enough to fix the damage that was done to his liver and bone marrow (still no idea what caused the damage, likely some auto immune predisposition that was triggered by a virus or something) but the doctors assure me that it is very well possible and all signs point to his healing. Fingers and toes are crossed. Yet i am also happy to stay as long as he needs to heal so I'm not attaching myself to the idea of a swift discharge either. But I find that I actually miss doing dishes and laundry and all the simple frustrations that come with every day life. Little problems make for huge blessings. I will never take that for granted. Perspective is a beautiful thing and we have gotten a huge dose of it this past 11 days.
June 30th, 2014
Just when I start to lose my shit, you are all here to lift us up. Now two of Nathan's doors are adorned with cards and pictures from his friends and family and I am firmly convinced that he will remember his time in the hospital as a time when he got lots and lots of love and presents. Thank you so much for brightening our day and helping us feel your love and support in such a tangible way.
July 1st, 2014
No real news this morning. Waiting for biopsy results and watching his counts. Nathan has requested no visitors today though. He is happy to have more free time than the past few days and, in his words, he's tired and just wants to explore the hospital with mommy, daddy and cam. I don't blame him, the past few days have been pretty crazy and the steroids have given him lots of highs and lows.
July 2nd, 2014
Getting closer to solving this puzzle and I'm feeling encouraged today. He might still need that bone marrow transplant, who knows what the future will hold and whether his own marrow will self repair or not, but it feels good to start seeing things line up a little more clearly. Looking forward to talking to the doctors tomorrow morning. In the meantime, he has had a super happy day and is playful as ever.
July 4th, 2014
Feeling a bit overwhelmed this morning. We have gotten more information about what is triggering all of Nathan's symptoms over the past few days but the treatment options are generally not clear cut. Seems the steroids have stopped making any major impact. There are other immunosuppressives we can use to calm down his immune system and stop it from attacking his liver and bone marrow but balancing the side effects is difficult. Or we can wait and see what his body does over time but my patience is admittedly wearing thin. So, I know lots of people want updates, sadly there isn't much encouraging information on his recovery. The good news is that he continues to be very happy and easy going about everything and his external symptoms do not even come close to matching the severity his internal issues... Which is why the doctors have been fairly conservative thus far. So, I guess I need some positivity today more than anything. Please no messages asking for detailed information on his labs or diagnoses, or suggestions to get more opinions. It is clear that we are in a great place right now and they are working their asses off on a complex case that is incredible rare and unusual. I may not be as responsive to messages today but I appreciate every kind thought, word and prayer that you can continue to offer us.
July 6th, 2014
Happy fifth birthday to my sweet, loving, happy little guy. When I told him the other day that his birthday would be in the hospital, he replied "that's ok, my grandmas and grandpas will come here and I'll still get presents". Yes indeed little dude. He has the biggest heart and always looks at the bright side, I hope he has a very special day!
This little video gave me tears! Thank you all for being so wonderful and thinking of Nate today.
http://www.youtube.com/watch?v=ObgeK1zYQWk
Nathan is enjoying a little taste of freedom today. This place is pretty fantastic. Hope we can spend a little time each day stretching our legs here so long as Nathan is stable.
July 8th, 2014
This is what breakfast looks like with a child on steroids. Can't help but giggle. You'd think it was torture that he had to wait an hour before breakfast due to an ultrasound this morning. Poor hungry kid
July 8th, 2014
July 9th, 2014
July 11th, 2014
July 11th, 2014
Spending the weekend with Jay and the kids at Ronald McDonald house. Seeing the kids hug and smile when jay and Camryn got here brought happy tears to my eyes. And the realization that, while I love and miss my home dearly, I don't really care at all if we have to stay here for a very long time if that's what it takes to make him better. We are still hoping that the new medication will help him improve but, if it doesn't, the doctors are still working to get to the root of it all. They think he may have a primary/inherited immunodeficiency that he was handling just fine until some trigger caused his system to just go haywire and bring on his current state. We are having a conference call with the National Institute of Health Monday as they will be doing some genetic testing. If their testing for a few specific genetic abnormalities (the ones that are most likely to apply to him and that they are currently studying in depth) comes back negative then the hospital will be doing some broad spectrum genetic sequencing on him. Basically it's challenging to treat if they don't know the root cause, everything else is a shot in the dark and treating the symptoms... Which may end up may have to be the case too as there is a chance that we may never know the absolute root cause but they are working their asses off. So, my point, clearly this is out of my hands and clearly I am right where we need to be. Even the discussion of the real possibility of a bone marrow transplant and all that goes along with that kind of left me numb. Truly, all that matters is that he gets better. Whatever that takes. Even if we may be in the hospital for months, even if he has to get really really sick before he gets better. I have to be ready for it all, especially all the hard messy ugly scary parts of it. And I feel like I am. In the meantime let's hope this medication can help calm things down at least a little bit. And I remain thankful that he continues to be his happy wonderful (and ravenously hungry) self. Thanks for reading, supporting and sending your love
July 14th, 2014
Sweet dreams little dude❤️
July 18th, 2014
Sitting in the clinic for a crazy long time today while Nathan gets some red blood rather than just his daily dose of platelets. He is actually napping here as I type. Seeing some improvement in his liver numbers and hoping this is the beginning of a real trend rather than just another another blip like we've seen in the past. Tomorrow marks one month on this journey, pretty incredible to think it's been so long as it feels like one really intense and excruciatingly long day to me, but somehow life is moving on all around us. We may be checking back into the hospital on Monday for a couple days as there are liver and bone marrow biopsies scheduled Tuesday morning. Hoping that his numbers really improve over the weekend, then they will cancel the biopsies while we wait and hope that this is the answer. I sure hope so because medication side effects are no fun but I will embrace it if this is what it takes for him to recover. Otherwise, they are taking him off the immunosuppressive meds within a week and seeing where he lands without them. In the meantime, I'm happy to spend the weekend with jay and camryn and we are moving into a larger "long term" room at the Ronald McDonald house so we will have more space while we are here. Thanks again to all of you who are thinking, hoping, praying and loving on my little guy! He has such strength and I have to think that all of the energy you are throwing his way is helping him to fight.
July 21st, 2014
Biopsy canceled so we don't have to check into the hospital tonight. Woot! Looks like the medication might be helping his liver but his bone marrow is still faltering. They want to give the meds a good week at therapeutic levels before going forward with a liver or bone marrow biopsy. A future bone marrow transplant is looking more likely but we'd much rather start that process with him having a healthier liver so here's hoping these meds continue to help at least in one area, even better if they give him a full recovery.
July 23rd, 2014
Outpatient bone marrow biopsy scheduled for friday morning. The doctor thinks there's a good chance that a syndrome is developing as we wait (hemophagocytic lymphohistiocytosis, or HLH, try saying that three times fast). If the bm evidence matches his hunch, we will have an official diagnosis and be admitted to the hospital to begin treatment Monday. If not, more waiting and watching as his other labs only barely meet criteria for the disorder which could mean it's just very early or that it could be something else entirely. In their words, he just looks too good to be an HLH kid. On the side of progress, liver numbers continue to improve with his current regimen, still very elevated but slowly coming down. Nathan continues to be wonderfully upbeat despite everything.
July 8th, 2014
Starting a different medication today which should (theoretically) target the T cells that are attacking his liver and bone marrow. Hoping it'll help but it will take 1-2 weeks to know for sure. The good news is that, assuming all is the same, they are planning to discharge us to the Ronald McDonald house in the next couple days. This way we are close enough to get frequent platelet transfusions and continue daily care and testing/monitoring here but we have a bit more space and can also have a few nights and meals together as a family rather than being split up all the time. It is definitely not the same as home but I'll take my blessings as we get them, and it'll be wonderful to feel a bit more normal again for sure. Jay is back at work is week, working from home and going into the office as needed, but on FMLA for the time being in case he needs to take intermittent time off. He and cam will be splitting their time between home and Ronald McDonald. So let's hope the next couple days continue as they have been so we can get a break from our hospital room.
July 9th, 2014
Packing up and heading to Ronald McDonald House this afternoon. Little man is napping while getting some much needed hemoglobin. Of course this is the day when Jay is back in the office. Thankfully my parents will be here to help the move. Where did all this stuff come from?
July 11th, 2014
Feeling incredibly thankful for...
1. The kindness and generosity of friends and family. Whether you have given me much needed therapy, brought over food, given cam a break so she can just have fun and be a kid, visited us here, sent a card or craft or gift to cheer up Nathan, given us a donation to help with all the extra financial uncertainties or helped out in any number of ways... I am infinitely appreciative. You all have stepped up big time and I will never forget it.
2. Good health insurance. The bills have started coming in. Wow... Just wow. While there are other ways we had hoped to spend our savings, it is beyond comforting to know that our financial lives will not be torn apart by this. I can see how quickly people would have to have to file bankruptcy due to medical bills and very thankful that is one worry I do not have.
3. Jay. He is a single dad at this point and I have no idea how he is juggling it all but he's doing a damn amazing job at it. Love you honey!
4. These resilient kids. Despite the upheaval, their smiles are a constant presence.
5. That lovely little Ronald McDonald House for giving us a place to stay until we can go home. This hospital is truly amazing but I think we are both over it and hoping to find at least a little normalcy.
I'm feeling quite blessed right now and feeling the new to count a few of my many many blessings.
Spending the weekend with Jay and the kids at Ronald McDonald house. Seeing the kids hug and smile when jay and Camryn got here brought happy tears to my eyes. And the realization that, while I love and miss my home dearly, I don't really care at all if we have to stay here for a very long time if that's what it takes to make him better. We are still hoping that the new medication will help him improve but, if it doesn't, the doctors are still working to get to the root of it all. They think he may have a primary/inherited immunodeficiency that he was handling just fine until some trigger caused his system to just go haywire and bring on his current state. We are having a conference call with the National Institute of Health Monday as they will be doing some genetic testing. If their testing for a few specific genetic abnormalities (the ones that are most likely to apply to him and that they are currently studying in depth) comes back negative then the hospital will be doing some broad spectrum genetic sequencing on him. Basically it's challenging to treat if they don't know the root cause, everything else is a shot in the dark and treating the symptoms... Which may end up may have to be the case too as there is a chance that we may never know the absolute root cause but they are working their asses off. So, my point, clearly this is out of my hands and clearly I am right where we need to be. Even the discussion of the real possibility of a bone marrow transplant and all that goes along with that kind of left me numb. Truly, all that matters is that he gets better. Whatever that takes. Even if we may be in the hospital for months, even if he has to get really really sick before he gets better. I have to be ready for it all, especially all the hard messy ugly scary parts of it. And I feel like I am. In the meantime let's hope this medication can help calm things down at least a little bit. And I remain thankful that he continues to be his happy wonderful (and ravenously hungry) self. Thanks for reading, supporting and sending your love
July 14th, 2014
Sweet dreams little dude❤️
July 18th, 2014
Sitting in the clinic for a crazy long time today while Nathan gets some red blood rather than just his daily dose of platelets. He is actually napping here as I type. Seeing some improvement in his liver numbers and hoping this is the beginning of a real trend rather than just another another blip like we've seen in the past. Tomorrow marks one month on this journey, pretty incredible to think it's been so long as it feels like one really intense and excruciatingly long day to me, but somehow life is moving on all around us. We may be checking back into the hospital on Monday for a couple days as there are liver and bone marrow biopsies scheduled Tuesday morning. Hoping that his numbers really improve over the weekend, then they will cancel the biopsies while we wait and hope that this is the answer. I sure hope so because medication side effects are no fun but I will embrace it if this is what it takes for him to recover. Otherwise, they are taking him off the immunosuppressive meds within a week and seeing where he lands without them. In the meantime, I'm happy to spend the weekend with jay and camryn and we are moving into a larger "long term" room at the Ronald McDonald house so we will have more space while we are here. Thanks again to all of you who are thinking, hoping, praying and loving on my little guy! He has such strength and I have to think that all of the energy you are throwing his way is helping him to fight.
July 21st, 2014
Biopsy canceled so we don't have to check into the hospital tonight. Woot! Looks like the medication might be helping his liver but his bone marrow is still faltering. They want to give the meds a good week at therapeutic levels before going forward with a liver or bone marrow biopsy. A future bone marrow transplant is looking more likely but we'd much rather start that process with him having a healthier liver so here's hoping these meds continue to help at least in one area, even better if they give him a full recovery.
July 23rd, 2014
Outpatient bone marrow biopsy scheduled for friday morning. The doctor thinks there's a good chance that a syndrome is developing as we wait (hemophagocytic lymphohistiocytosis, or HLH, try saying that three times fast). If the bm evidence matches his hunch, we will have an official diagnosis and be admitted to the hospital to begin treatment Monday. If not, more waiting and watching as his other labs only barely meet criteria for the disorder which could mean it's just very early or that it could be something else entirely. In their words, he just looks too good to be an HLH kid. On the side of progress, liver numbers continue to improve with his current regimen, still very elevated but slowly coming down. Nathan continues to be wonderfully upbeat despite everything.
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